Do Medications Actually Help in Patients with Postural Orthostatic Tachycardia Syndrome?: A Qualitative Study

Abstract

Background

Postural orthostatic tachycardia syndrome (POTS) is a chronic autonomic disorder associated with debilitating symptoms. No medications have been approved for treatment, and patients commonly use off-label medications to treat symptoms. The hemodynamic implications of certain medication use have been examined, but patient experiences with taking off-label medications are underreported.

Methods

A qualitative descriptive study was conducted with 13 patients (all women; aged 38 ± 13 years) diagnosed with POTS who had taken off-label medications for their symptoms. Semistructured video interviews were conducted to explore how they experienced and perceived their medication use. Interviews were recorded, transcribed, and analyzed using conventional content analysis.

Results

Most patients described medications as being beneficial and life-altering, re-enabling basic activities, work, exercise, and social engagement. All patients intended to continue therapy. Side effects were common but generally manageable. Propranolol frequently was associated with fatigue and hypotension. Ivabradine often caused transient early headaches and visual symptoms that subsided. Dosing frequency was largely acceptable. Major barriers included the following: medication cost, especially for ivabradine when patients were not insured; limited clinician awareness of POTS; diagnostic delays; and uncertainty about long-term safety.

Conclusions

Medications provide meaningful functional improvement for many patients, but treatment burden, financial barriers, and information gaps persist. Care should prioritize individualized, patient-centred prescribing, and shared decision-making. Additional research should compare common medications to increase exposure and evaluate long-term outcomes and access.

Central Illustration

Postural orthostatic tachycardia syndrome (POTS) is an underrecognized disorder of the autonomic nervous system characterized by an exaggerated increase in heart rate of ≥ 30 beats per minute (bpm) within 10 minutes of standing, in the absence of orthostatic hypotension (blood pressure drop > 20/10 mm Hg).1, 2, 3 POTS impacts predominantly pre-menopausal (age 13-50 years) female patients and includes chronic (> 3 months), debilitating cardiac and neurologic symptoms, which often improve only with recumbence.³ The syndrome has no specific cardinal symptom, or a critical number of symptoms needed for diagnosis,³ although the orthostatic symptoms must be dominant in the clinical presentation and have been present for > 3 months.³

Despite the significant impact this disorder has on daily functioning, no approved specific treatments are available for patients with POTS. Patients often are prescribed a combination of off-label medications (eg, beta-blockers, ivabradine, or adrenergic agonist).³ Little is known about the subjective patient experience while taking off-label medications. Understanding this perspective is crucial, as hemodynamic control alone does not capture the impact on quality of life, treatment satisfaction, or adherence. The purpose of the current study was to examine the experience of patients with POTS when they are taking off-label medications for their symptoms. Additionally, we wanted to understand the perceived benefits and limitations of taking these medications. These findings may guide the design of future clinical trials and contribute to the development of evidence-based clinical practice guidelines for POTS treatment. This study was completed in tandem with a double-blinded, placebo-controlled, randomized crossover drug trial of ivabradine and propranolol in POTS. Ivabradine is a funny channel (I_f) blocker that has been used to reduce heart rate in patients with inappropriate sinus tachycardia and POTS.⁴ Propranolol is a nonselective beta-blocker that also is used to lower heart rate, but it may have off-target side effects due to the broad distribution of beta-adrenergic receptors throughout the body.⁵ Patients took study medications in addition to their regularly prescribed medications.

Methods

Study design

A qualitative descriptive design⁶ was used to investigate POTS patients’ experience taking off-label medications for their symptoms. This design was employed to explore and highlight patient experiences without imposing theoretical assumptions.⁷ The study received approval from the University of Calgary Conjoint Health Research Ethics Board (REB24-0970).

Sample

Patients were recruited from the Calgary Autonomic Investigation and Management Clinic between June 2024 and January 2025. Patients with POTS who had participated in other research studies were recruited by e-mail. Patients were eligible if they had a clinically established diagnosis of POTS, were taking medications for their POTS symptoms, were aged 18-60 years, had access to a working computer (as interviews were conducted using a virtual platform), and provided informed consent. All patients with POTS met the criteria defined in the Canadian Cardiovascular Society Position Statement.³ Diagnosis required orthostatic tachycardia, defined as an increase in heart rate from the supine position to upright of ≥ 30 bpm within 10-minutes of standing if aged > 19 years.³ All interviewed patients were aged > 20 years. This change had to occur in the absence of orthostatic hypotension, noted as a drop in blood pressure of > 20/10 mm Hg. Additionally, patients had to present orthostatic symptoms that subsided with recumbence, lasting > 3 months.³

Data collection

Data collection was undertaken through individual patient interviews using the online video meeting platform Zoom. The primary author (J.U.) conducted all interviews using a semistructured guide that was reviewed by expert clinicians (R.S.S., S.R.R.) and a qualitative health researcher (K.K.-S.). The primary research questions centred around how patients with POTS experience taking medications for their symptoms. Sample questions investigating this experience included the following: (i) “How would you describe your experience of taking medications for POTS”?; (ii) “Do you experience any side effects? If so, what are they”?; and (iii) “Would you be willing to continue your medications for the foreseeable future? If so, why? If not, why not”?. Sample questions describing the perceived benefits and limitations included the following: (i) “Have your medications impacted your daily life? If in a positive way, what aspects of your life have been positively impacted? If in a negative way, what aspects of your life have been negatively impacted”? Sample questions describing how patients perceived their dosing frequency included: (i) “How do you feel about your current dosing frequency”?; (ii) “Do you feel that your dosing frequency is justified? How so”?; and (iii) “How does your dosing frequency impact your daily life? Follow-up questions were specific to the patient experience and evolved as themes emerged. Audio and video files of the interviews were saved on a password-protected computer, with access restricted to the research team. Interviews averaged 20 minutes in length (range: 11-35 minutes). The duration varied depending on the patient’s depth of experience and the amount of information shared.

Data analysis

Interviews were recorded using the Zoom platform, and then transcribed using the professional transcription platform Rev (Rev, Austin, TX & San Francisco, CA). The identities of all patients and identifying information were concealed in the transcripts. Transcribed interviews were analyzed manually using conventional content analysis, a qualitative approach in which codes and categories are derived from the transcripts.⁶ This approach is appropriate for the present analysis, given the limited a priori evidence on this topic. Additionally, this approach yields a detailed, descriptive account of patient experiences. Analysis was based on identifying key elements that addressed the experience of using medications for POTS. Two authors (J.U. P.D.) were responsible for generating codes and themes. Data analysis and organization were completed without the use of software. Each transcript was read by the investigators to generate initial codes and themes, by directly highlighting words that captured key concepts from each interview question. The coders each analyzed a subset of transcripts, using a shared preliminary codebook that was refined through regular meetings. Updates to the codebook, coding decisions, and main themes were documented in the master code sheet, which served as an audit trail. Each transcript was compared with previous transcripts to identify similarities and differences among patients, and new interviews were continuously added to the table as data were collected. Reflexive notes were maintained throughout coding to support interpretation. Findings are reported as a synthesis of themes. Quantitative data are presented as mean ± standard deviation.

Rigour and sample size

Interviews were conducted until data saturation was reached. In qualitative research, data saturation is considered the gold standard for determining adequate sample size and is achieved when the following is true: no new codes or themes emerge; additional interviews stop producing new information; and further data become unnecessary for replicating the findings.⁷ In this study, both coders independently identified saturation during the coding process and then confirmed agreement through discussion. Saturation was deemed to have been reached once themes and codes began to repeat across interviews, with no new insights emerging. This process ensured that the sample size was sufficient to capture the depth and diversity of patient experiences while maintaining methodologic rigour. Sample size was not determined a priori. The study team was composed of researchers who were involved in the development of the interview questions, the interview process, as well as data analysis. Probing was conducted during interviews to ensure sufficient detail was acquired from patient responses.

Results

Demographic characteristics

Participants included 13 patients with POTS, all of whom identified as women. Patients were aged an average ± standard deviation of 38 ± 13 years (range: 22-59 years). Demographic data are displayed in Table 1. All patients had a physician diagnosis of POTS and had taken medications for their symptoms prior to the interview.

Table 1.

Demographic characteristics

Demographic	Value (n = 13)
Age, y	38 ± 13
Height, cm	167 ± 7
Weight, kg	77 ± 26
Employment status
Employed	7
Unemployed	4
Student	2
Other medications used previously
Propranolol	13
Ivabradine	11
Midodrine	7
Metoprolol	3
Modafinil	1
Methyldopa	3
Fludrocortisone	2
Bisoprolol	1
Lansoprazole	1
Montelukast	1
Famotidine	1
Cetirizine	1
Pyridostigmine	1

Values are mean ± standard deviation, or n.

Medications are seen as a positive experience for most

Most patients (11 of 13) described their experience regarding taking medications specifically for POTS as positive and beneficial. They noted improvements to their quality of life that had convinced them to not stop taking their medications. One patient stated, “I’m reliant on them.” Another patient explained, “I’m able to go out and do something like swimming and not feel like my heart’s racing and I’m going to pass out at any moment.” Another patient stated, “When I'm not on medication then I honestly can barely get through the day. I'm so exhausted, physically and mentally.” Most patients noted the positive effect of medications to remove the negative symptoms of POTS. Two patients noted an opposing view—one described her hesitancy to take medications and indicated that she would rather solve the issue in a “natural way” by listening to her body and or using natural remedies. They both still took the medications, as they felt doing so was the only way to feel better, given their condition.

Patients with POTS experience side effects with their medications

Most patients experienced side effects with their medications for POTS, which varied depending on the type of medication used. Common side effects included fatigue, headache, high or low blood pressure, and low-quality sleep. Patients who took beta-blockers (eg, propranolol, metoprolol, and bisoprolol) noted experiencing fatigue, reduced quality of sleep, and lowered blood pressure. Patients who took ivabradine experienced an initial period of higher-intensity headache, fatigue, and vision symptoms. These symptoms were reduced after a few days. Patients who had taken midodrine noticed skin sensations such as “bugs crawling over my head.” One patient noted that when taking methyldopa, she felt very fatigued throughout the day until she was taken off the medication. In contrast, one patient noted that she did not experience any side effects from taking her prescribed medications.

Patients are willing to continue their medications for the foreseeable future

All patients stated they would continue taking their medications for POTS for the foreseeable future. One patient noted the following: “If there’s something like a medication that’s going to help me, I’m going to take it because I’d rather take something and be able to have it help my symptoms than not take anything and just suffer from symptoms when there is a solution.” Another stated that, “For me, it’s the difference between being completely bedridden and having every day be a bad day and having some days that are good days. Medications allow me to have some good days.” Many patients noted that medications have allowed them to return to work and enjoy daily life tasks, such as walking their dog or playing with their children. One patient noted that even though she would continue her medications for the future, she would rather get the same results with lifestyle changes.

Medications have impacted patients’ daily lives in both positive and negative ways

Patients with POTS noted both positive and negative impacts of their medications on their daily lives. Most noted the positives as being able to get out of bed, being able to complete daily tasks without having to take a break, having more energy, and being able to complete upright exercises and challenge themselves with resistance training, and do things that bring joy in life, such as attending concerts and social events, and being with family. One patient noted, “Family members have been like ‘wow, you just seem like you’re not as exhausted all the time, and you have a little bit more energy.’” Two common negative points related to taking medications for POTS were noted. The first was that having to remember to take the medications everyday (establishing a routine) was difficult. Patients noted that, to overcome this challenge, they began using alarms and pill organizers, which helped establish a routine. The second was the financial cost of certain medications, such as ivabradine, due to lack of insurance coverage (detailed below).

Most patients feel content about their current dosing frequency, and believe it is justified

Most patients stated that they enjoy their current dosing frequency. One patient stated, “Feels good, feels balanced after some trial and error.” Most patients also stated that they believed their current dosing frequency was justified as they could feel the effects of the medications wear off when the next dose occurs. One patient noted, “One day where I did forget my ivabradine and I noticed a difference [sic]. My lips were going blue, my extremities start getting really cold when I push it too much, so I was getting very cold with the extremities. And then I took the ivabradine after and it actually helped it.” Although most patients felt that their dosing was appropriate and effective, 2 reported that the effects wore off too soon and suggested increasing the dosage. Another patient noted that dosages should be tailored to fit the patient’s lifestyle. For example, if a patient attends conferences at which they stand for extended periods of time, having a higher/more frequent dosage might be beneficial. Another patient noted how she functions on “windows of time”: “So for the first four to five hours after I take it, I know I can get things done. And then it's questionable the last little bit depending on how I'm doing. And then again in the evening when I take it it's like I have that window of time to do things.”

Concerns about financial costs of medications for POTS

Five patients noted that they are lucky to have insurance coverage for their medications, most notably ivabradine, due to its high cost. Of these patients, 3 noted that without the insurance coverage, they would need to stop ivabradine as it would be too expensive to pay for out of pocket. One patient stated, “It is a bit hard because since I am on disability leave, I don’t have any insurance coverage for anything. So, it is hard to get medications when you have to pay for the full price of them.” Another patient stated, “The pharmacist was like ’this is $175 just for a month’s worth.” And I was like, well, it helps me enough that I am paying it right now, but hopefully in the future, insurance companies will acknowledge that it is helping me at least.” One patient noted her anxiety surrounding medications, particularly ivabradine, as long-term research on this medication for use in POTS is lacking.

Concerns about the lack of research and knowledge about POTS treatments

Another 5 patients believe that increasing research and knowledge about POTS, its diagnosis, and treatment options are needed. In addition, they believe the wait times to see a POTS specialist need to be reduced. One patient noted, “I remember I went to the ER and I had really bad chest pain and my heart rate was through the roof and my blood pressure was dropped and the doctors were like, ‘well, no, you're fine. Just go home.’ And it was definitely a confusing time because I was told by a lot of doctors, we think you have POTS, but we can't officially diagnose you.” Another patient shared the following: “Being able to find a medication that actually worked was a long process and I had a lot of debilitating symptoms while trying to find medications.” One patient explained that a possible solution to the diagnostic delays was to share POTS research and knowledge with family physicians so that diagnosis could occur much faster instead of having to wait for a specialist.

One patient had a different concern surrounding longer-term research studies. She stated that her main anxiety relating to medications came from the lack of knowledge about long-term effects of these medications in patients with POTS. She explained that she would be more comfortable with her medications if research investigated the long-term implications of chronic use of certain medications, such as ivabradine.

Discussion

This qualitative study explored the experiences of patients with POTS who were taking medications to manage their symptoms. Most patients described the medications as beneficial, reporting meaningful improvements in their quality of life and functional capacity. All patients noted that they would continue their medication regime in the future. Patients described challenges with their medications, notably financial ones, including a lack of insurance, available knowledge and/or research on treatment options, and long-term safety data. These findings (summarized in the Central Illustration) provide important patient-centred insights into pharmacologic management in POTS, an area in which objective outcomes have often been prioritized over lived experiences.

Central Illustration.

Patients with POTS who have taken medications for their symptoms reported the following: improved symptom management; ability to return to work, school, or social life; increased energy; and increased quality of life. They also noted side effects, lack of long-term reliable data, and difficulty with remembering doses. Patients noted that the pros outweigh the cons. POTS, postural orthostatic tachycardia syndrome; QoL, quality of life.

The experiences described by patients reinforce the fact that medications can be transformative for many individuals with POTS. Patients frequently described medications as enabling engagement in basic activities, such as exercise, work, and social life, highlighting a broader impact on identity and independence. This captures the significant role pharmacologic therapy can play, and the value of incorporating patient-reported outcomes into both clinical practice and future trials.

Although the benefits usually outweighed the downsides of medications, patients also described challenges that shaped their treatment experience. Side effects, though often manageable, required adjustment, and sometimes influenced activity planning or dosing preferences.

These findings provide similar insights to those in previous literature that examined the “treatment burden,” which includes side effects, strict dosing schedules, and lifestyle disruptions.⁸ Patients with routine-building strategies, such as using pill organizers and alarms, reported a lower level of burden than those taking routine medications for the first time. Similar themes have emerged in qualitative studies of hypertension management and adherence; patients have to balance therapeutic benefits against side effects and lifestyle inconveniences.⁹ This finding emphasizes the importance of discussing practical feasibility when selecting dosing schedules.

Cost barriers, particularly for ivabradine, emerged as a determinant of medication sustainability. These patients explained that without insurance coverage, continuing therapy would be almost impossible, despite its benefits. This finding reflects broader healthcare inequities, particularly in relation to autonomic disorders, for which lack of physician awareness, limited diagnostic pathways, and inconsistent insurance coverage and/or criteria often delay diagnosis and treatment.¹⁰ Improving physician awareness of POTS, reducing diagnostic delays, and advocating for greater insurance coverage can help relieve patients’ financial and emotional stress. Additionally, economic analyses assessing cost-effectiveness are needed.

In addition to symptom control, patients noted that medications reshaped their daily routines, energy levels, and emotional health. Regaining the ability to participate in basic life tasks contributed to a sense of having a “normal” life. For some, this created a tethering effect, with a missed dose quickly worsening symptoms. This vigilance reflects patterns seen in other chronic illnesses for which treatment adherence becomes a central, and sometimes burdensome, part of life.¹¹

Uncertainty regarding long-term safety of medications also caused anxiety for some patients, highlighting gaps in evidence for chronic use of common POTS medications. Similarly, such uncertainty has been reported in the dysautonomia literature, with patients often feeling that they are “trialing” treatments, without clear evidence guiding long-term medication use.¹² This finding reinforces the need for studies with extended follow-up, comparative effectiveness designs, and outcomes that move beyond heart rate evaluation to assess quality-of-life, functional capacity, and treatment satisfaction. Expanding qualitative research to include more-diverse patient populations may broaden the understanding of medication experiences for POTS.

Our findings demonstrate that patient perspectives are essential to guiding individualized pharmacologic decision-making in POTS. Clinicians should try to incorporate patient-reported experiences when selecting therapies. Using shared decision-making models, as used in other medical specialities,¹³ may help balance symptom relief with the psychological and financial implications of living with POTS.

Limitations

The study patient sample was all female, but an important point to note is that the POTS patient population is more than 90% female.¹⁴ Male POTS patients may have considerations that are not addressed by this report. Patients were recruited from a single specialized clinic where individuals may have prior research exposure, potentially causing overrepresentation of more-engaged patients. Findings may not fully reflect the perspectives of other populations. Future studies should recruit from more-diverse clinical settings to enhance generalizability and capture a broader range of patient perspectives. Additionally, for patients who did complete the concurrent crossover drug trial, all interviews were conducted after completion, which could have shaped how they reflected on their symptoms and experiences. The interview guide, however, focused on general experiences with POTS, rather than the study interventions, and no consistent trial-related influence was observed. Finally, we did not collect detailed socioeconomic information (eg, income, education level, and insurance status), which could influence how patients perceive and navigate their medication burden. Our findings should be interpreted with this limitation in mind.

Conclusion

Medications provide meaningful symptom relief and improved quality of life for many patients with POTS, although barriers persist, including side effects, cost, and limited long-term data. Patient narratives highlight the need for individualized, patient-centred prescribing practices and expanded access to effective therapies. Future research should integrate patient experiences into clinical trial design to optimize care for this underrecognized population.